Discussions By Condition: Medical Stories

I'm 36 and 4 years ago i started get dizzy spells, blacking etc.. then i started getting very tired.. had no energy very lethargic, my legs used to swell at that point.. also when i would carry bags or climb stairs my heart would miss beats or jump around and i'd feel exhausted...after a couple of years of suffering by which point i had become extremely unfit, i was diagnosed with extreme chronic low blood pressure.. at night it was dropping to 50/40 and in the day was around 60/50.. some months later and another blackout linked trip to the A&E dept.. my sugar levels had dropped also now.. *(i should mention i've been reactive hypoglycemic since i was a child) a few blood tests later is was uncovered that i was lacking salt.. and that my red blood cells were small and that i didn't have as many as other people.. so salt pills later and fludrocortisone i was sent home.. i was tested for addison's disease which came up as a no after an mri scan i was also tested for an insulinoma. What's funny is i have nearly all the symptoms of addisons disease apart from the darkening of skin.. the test they did was sent off to india.. i did have a little more energy but not alot.. i was still getting very dizzy and exhausted.. which then leads us to a ton of tests later and my last major admission into hospital last april.. i blacked out and my sugar levels were really low -3 (hope that sounds right i can't really remember at the time, when i have bad turns i get confused and can't focus) anyway once again i am tested for a tumor which shows negative, also for diabetes which is also negative.. meanwhile i have also developed a really bad new symptom on top of the legs swelling a little.. which is my feet turning blue/black due to blood pooling.. ( i had had this a a few occasions in the past, especially my nails in my hands going blue etc)Anyway one evening in hospital i really wasn't feeling very well so i called the nurse.. they took my bp which was 70/45 but my heart rate had dropped from its normal 55/65 to 46.. i was rushed to IVU as i felt uncomfortable in my heart and generally felt very unwell.. on being there for 4 days on 24hr monitoring.. one day my heart rate keep slowing day to the point it dropped to under 28 i was given an injection to speed it up.. 153 bmp 10 seconds later and the worst experience of my life i slept... they then decided to put me on midodrine aswell as the hormone steroid..anyway i seemed to get better.. i moved to LA and the weather definitely seemed to help my condition.. bearing in mind still no underlaying cause had been found.. i had the odd day but on the whole a day in bed seemed to fix it...which brings me to the present.. 8 weeks ago i went to see the specialist whom i feel looks on myself and my condition as a bit of a joke.. as i think he judges my condition by the way i look and i am a lady who dresses well and looks after herself and can cleverly do a natural look makeup to give myself colour even when i am very pale..anyway he decided that we should take me off the hormone steroids and double up the midodrine dose.. which i was over the moon about!! anyway 3 weeks ago i started to feel tired again.. i've also noticed my underarm hair is patchy some of it has stopped growing.. my legs blood pooling has been really bad the last 4 days and 3 days ago i woke up at 3am with discomfort in my chest.. i did my bp and it had dropped from it's normal 100/70 to 84/54 and remained like that til morning when i took a dose of midodrine.. i've been resting and had hoped my condition would stable itself out.. only as i type this my heart feels skipping.. i have my legs elevated as if i put them down they pool.. i'm also getting hot spells, sweating and my cheek are flushed i also have a mild pain in my stomach which is bloated..i'm getting goose bumps chills more which i appreciate is side fx of the midodrine but to be honest i don't reallt get that a year later.. i feel like an animal that just wants to curl up in a ball.. as i keep getting a pain in my stomach and the goosebump chills feel weird.. i've noticed when my bp is down my heart rate is speeding up to over 100.. i'm guessing this is due to the fact it's trying to get the blood going round either that or it's freaking out!!I just wondered what you thought might be going on?? have i caught a bug that is messing my illness? am i verging on my body going into crisis?somedays i do wonder if there is something seriously wrong with me.. and if the other automics are going to go.. i wish i knew what was going on!!I'm in LA with no medical insurance...

here's a full list of my illness'svasovagil syncopeautonomic dysfunction (tested for.. apparently it's only the non working function of constricting the veins that has gone)reactive hypoglycemicendometriosisposEhrlers-Danlos Syndrome (EDS) type 2

8 Replies:

Always get copies of your blood tests. You might have an electrolyte imbalance. You care about your health more than a doctor does, they only spend 5 - 10 minutes. I would take notes and have a list of questions to read off to the doctor so that you can get your moneys worth.I have kids that have distal RTA and I have diabetes, and have been suffering from low blood sugar and had a fainting scare one night that was not low blood sugar. Regardless the doctors aren't God and they can't fix everything. Just make sure to do your homework too and keep on top of the situation at hand.You can try to get emergency medical insurance through the state of California. http://www.healthinsurance.org/california has a link to information about this program.

i am 29 years old and last july (2008) was diagnosed with ans. at first when i started passing out, the doctors thought it was from the pain caused by my endometrosis. then i ended up in having to go to the emergency room from passing out and low bp. i stayed in the hospital for a week with a bunch of test. the doctors thought it was ans but wasn't sure if it was my nervous system or heart. so i go to a neurologist and do a tilt test. i passed out on the table and had very low blood pressure. the doctor put me on midarine and flocret. when this didn't help the up the doses and added potassium, along with a high salt diet. after that didn't help he said some people never stop having symtons. now i am 22 weeks pregnant and he took me off my meds, and says see u after the baby is born. i don't really know what to do. my illness is worse since i am pregnant. my ob isn't really concerned about it. my doctor also said i needed to move to montana were it is cold. the cold weather helps with all the symptons. i live in kentucky and really don't know what to do. i have to stay in the house when it is really hot out. i have to have someone to stay with me all the time. which i hate. i went from not having to rely on anyone to always relying on someone, even to be with me when using the restroom!!! i have to sleep elavated so my blood pressure doesn't fall. i pass out a lot. i have to keep my house about 60 degrees so i don't pass out as much. i hate living with this. now that i am pregnant i can't find any info about this. so it is a wait and see thing. but this illness is acciated with endo. i had to go to a great doctor in gorgia to have surgury. i am really glad i did. he got the endo and now i don't hurt as much. please forgive me for the miss spelled words. if you want to talk my email is mlkbmk@windstream.net

I have just been Diagnosed too and am wondering how this can come on from apparently no place and now affect me so badly. I have lost my Drivers License may have to find a new Job. Feel the symptoms all the time.I am going to try to treat myself as I am on first steps of doctors treatment of mass salt intake not working at all.I am going to start with removing the Calcium from my body. A Chetel I think its called. Apparently it works well for High BP heart related ailments. Either way flushing my body for 300 bucks to see if this helps is all good. I have my own theory on this and hope it works.

Hi There,My heart aches for You but I would love to talk to you and tell you about me and Something GREAT well Great to me and heres hoping and praying it will help you too. In April 2004 I was diagnosed with Autonomic dysfunction. Keep in mind from 1995 til 2001 I fought RSD and got where doctors at Mayo CLinic in Minnesota, Duke and even the queen of Englands neruologist said I would NEVER get... When they told me I had Auto. Dys. I put my hand up and said please don't tell me anymore I'll try some stuff on my own. I took 10 salt tablets a day, elevated my bed and when a dizzy spell would hit I would grab hold of anything I could find, bend my head down and hold on for the ride. Well in April 2008 it took me to 50/20BP and ICU. From there I began like you the midadrine, fludracortisone and yes within months a wheel chair.. Oh my but hey my theory is I have to make the best of what I'm dealt. By the way, Hot weather as you know is the worst. It dialates our blood vessels and the BP goes down. Anyway, when they trippled the midadrine and doubled the Fludro. and I was still lying flat on my back and the docs where saying, Sorry but the disease is just getting worse. Well I took my wonderful doc. by the face and said, "Think out of the BOX!" I'm not asking for a cure just quality of life. He began to mumble medical terms and then said here's my idea. It's never been done but I think it might work. Of course I said Do it NOW.. He wanted to run his theory by Vanderbilt, I said just do it. One month later he hadn't heard from Vanderbilt and I was not even able to sit up in my wheelchair and speaking was rough. Here's what we did... I went into the hospital, they put a Picc line into my arm. Yes, everyday I IV infuse one 250ML bag of 0.9 Saline solution. The difference is most people get an IV SLOWLY,,, I push it in 20min. after a month or so of my body getting accustomed to this it Helps me sooo much that I went from EIGHT midadrine a day to TWO and my two fludracortisone. I won't lie, it something to get use to and I have tried the Hickman catheter in my chest, one lasted 3 months got infected, got another same thing, Feb 4th I got another pick line and thank the Lord it's working GREAT... Medicare and Medicaid will not pay for this procedure and my doctor and I are appealing and fighting the system. My phone number is 919-740-7336 My doctor is writing up our experiment and it will be in the medical journals. I don't care about that but what I do care about is HELPING others.. Look forward to hearing from YOU.. Hang in..Hugsrhealthy Hi,I'm 36 and 4 years ago i started get dizzy spells, blacking etc.. then i started getting very tired.. had no energy very lethargic, my legs used to swell at that point.. also when i would carry bags or climb stairs my heart would miss beats or jump around and i'd feel exhausted...after a couple of years of suffering by which point i had become extremely unfit, i was diagnosed with extreme chronic low blood pressure.. at night it was dropping to 50/40 and in the day was around 60/50.. some months later and another blackout linked trip to the A&E dept.. my sugar levels had dropped also now.. *(i should mention i've been reactive hypoglycemic since i was a child) a few blood tests later is was uncovered that i was lacking salt.. and that my red blood cells were small and that i didn't have as many as other people.. so salt pills later and fludrocortisone i was sent home.. i was tested for addison's disease which came up as a no after an mri scan i was also tested for an insulinoma. What's funny is i have nearly all the symptoms of addisons disease apart from the darkening of skin.. the test they did was sent off to india.. i did have a little more energy but not alot.. i was still getting very dizzy and exhausted.. which then leads us to a ton of tests later and my last major admission into hospital last april.. i blacked out and my sugar levels were really low -3 (hope that sounds right i can't really remember at the time, when i have bad turns i get confused and can't focus) anyway once again i am tested for a tumor which shows negative, also for diabetes which is also negative.. meanwhile i have also developed a really bad new symptom on top of the legs swelling a little.. which is my feet turning blue/black due to blood pooling.. ( i had had this a a few occasions in the past, especially my nails in my hands going blue etc)Anyway one evening in hospital i really wasn't feeling very well so i called the nurse.. they took my bp which was 70/45 but my heart rate had dropped from its normal 55/65 to 46.. i was rushed to IVU as i felt uncomfortable in my heart and generally felt very unwell.. on being there for 4 days on 24hr monitoring.. one day my heart rate keep slowing day to the point it dropped to under 28 i was given an injection to speed it up.. 153 bmp 10 seconds later and the worst experience of my life i slept... they then decided to put me on midodrine aswell as the hormone steroid..anyway i seemed to get better.. i moved to LA and the weather definitely seemed to help my condition.. bearing in mind still no underlaying cause had been found.. i had the odd day but on the whole a day in bed seemed to fix it...which brings me to the present.. 8 weeks ago i went to see the specialist whom i feel looks on myself and my condition as a bit of a joke.. as i think he judges my condition by the way i look and i am a lady who dresses well and looks after herself and can cleverly do a natural look makeup to give myself colour even when i am very pale..anyway he decided that we should take me off the hormone steroids and double up the midodrine dose.. which i was over the moon about!! anyway 3 weeks ago i started to feel tired again.. i've also noticed my underarm hair is patchy some of it has stopped growing.. my legs blood pooling has been really bad the last 4 days and 3 days ago i woke up at 3am with discomfort in my chest.. i did my bp and it had dropped from it's normal 100/70 to 84/54 and remained like that til morning when i took a dose of midodrine.. i've been resting and had hoped my condition would stable itself out.. only as i type this my heart feels skipping.. i have my legs elevated as if i put them down they pool.. i'm also getting hot spells, sweating and my cheek are flushed i also have a mild pain in my stomach which is bloated..i'm getting goose bumps chills more which i appreciate is side fx of the midodrine but to be honest i don't reallt get that a year later.. i feel like an animal that just wants to curl up in a ball.. as i keep getting a pain in my stomach and the goosebump chills feel weird.. i've noticed when my bp is down my heart rate is speeding up to over 100.. i'm guessing this is due to the fact it's trying to get the blood going round either that or it's freaking out!!I just wondered what you thought might be going on?? have i caught a bug that is messing my illness? am i verging on my body going into crisis?somedays i do wonder if there is something seriously wrong with me.. and if the other automics are going to go.. i wish i knew what was going on!!I'm in LA with no medical insurance...here's a full list of my illness'svasovagil syncopeautonomic dysfunction (tested for.. apparently it's only the non working function of constricting the veins that has gone)reactive hypoglycemicendometriosisposEhrlers-Danlos Syndrome (EDS) type 2as i child i had serious renal problemkindest regards

Hi, My heart aches for you and I am sooo sorry.. However, I also have autonomic dysfunction, I've had it since 2004 and did a pretty good job fighting it with 10 salt tablets a day and holding on for dear life when the BP would drop to 60/40. Then in 2008 (April) I went down for the count and ended up in ICU for 5 days with the BP 50/20. I tried to send all my scoop a couple of days ago even included my phone number but since I'm new to this sight I didn't know if you received the info or not.. Yes, I did the 8 midadrine a day, two fludracortisone, salt etc and yes I had the goosebumps when the dose got to that, itched too. Here's my GREAT NEWS for Me and I hope that maybe I can help you and others. Last June (2009) I was fine as long as I was lying down DUH when I tried to sit up the world would spin and the BP drop. The docs just kept saying, sorry the disease is just getting worse. Well, I took my doctor by the face and said, "Please think out of the BOX." I wasn't asking for a cure just a better quality of life. Well, he did lots of thinking out loud and came up with an idea that hasn't been done anywhere. I said, Do it today.. He said no he wanted to run it past Vanderbilt. The next week i send my doc a card telling him the importance of LIFE.. the next week I phoned and left him a message, by the third week his office phoned and set me up an appointment for July 28th. Well on that day i could barely sit up in my wheelchair and talking was not good. He hadn't heard from Vanderbilt and I didn't care. He sent me to the hospital. The next morning he met with me and my adult children to discuss what we were going to do... Here it is... simple but certainly HELPING me tremendously.. Here's to possibly helping you and others too. They put in a picc line.. yepper, instead of doing a SLOW IV treatment of 250mls of 0.9 saline slow,,, we push it through FAST. That in turn forces my blood to flow hence bringing my BP up. I am down to TWO midadrine a day and two fludracortisone. YAHOO.. The good Lord and Dr. S are awesome. Yes, I've had to adjust and learn and go through three trips to the hospital.. but hey my thing is I am doing the BEST I can to deal with what I have or am dealt. We went from the picc line to a hickman catheter.. that one worked for 3 months it got infected, out and in with another one pain yes but not that bad and certainly worth it.. three months later, yepper infected again YUK this time we went back to the picc line and Yippee and yahoo it's been in since Feb 4th and doing GREAT.. I infuse everyday and you guessed it Medicare and Medicaid will NOT pay for it.. It take 1/2 of my total income each month but my doc and I are appealing and fighting the forces. My doctor is writing this procedure and putting it into the medical journal. Also, you probably know this but HOT weather expands our perifial blood vessels causing the BP to drop, Cold weather constricts them helping it to RISE.. YAHOO.. I've also learned for me that if I eat SMALL portions of food and eat like every 4 or 5 hours I do much better. If I eat a normal portion all at one time the blood goes there and the BP DROPS not good. I am in a wheel chair lots, on my feet moving better in the evenings... STANDING in ONE PLACE is out of the question hence the wheelchair and I in the past two years have learned how to do tons of things ...I couldn't drive for almost 2 years but since March am driving again.. God is sooo good to me. yes, I have lots of Faith, Great Family, loads of incredible friends and FIGHT... Never Never Quit keep those dog gone Big Girl Panties on... I would love to talk to you . if you want my email or cell number let me know.I also have RSD in my left leg. That's what started this mess and helped me to get Autonomic Dysfunction. I know how to FIGHT...and don't accept it when they say, You will NEVER do something.. It is NOT easy but it' what I have to do...I look forward to hearing from YOU.... Keep on keepin on.. I'm in NC, I'm a FL baby and was there for 48 years love it but when I got RSD and was on Morphine, methadone etc, 35 lumbar sympathetic gangleon blocks, Radio frequency burns, an epidural catheter with marcaine etc etc my Special forces sons moved my daughter and I to NC... I did things with the RSD that doctors from Mayo Clinic in Minnesota to Duke to the Queen ofEnglands neurologist being consulted, they all told me I would NEVER get better WRONG.. that's another story but with a good ending.. One day at a time... hugsrhealthy Here's praying I can help I certainly can listen that's for sure... I'm 36 and 4 years ago i started get dizzy spells, blacking etc.. then i started getting very tired.. had no energy very lethargic, my legs used to swell at that point.. also when i would carry bags or climb stairs my heart would miss beats or jump around and i'd feel exhausted...after a couple of years of suffering by which point i had become extremely unfit, i was diagnosed with extreme chronic low blood pressure.. at night it was dropping to 50/40 and in the day was around 60/50.. some months later and another blackout linked trip to the A&E dept.. my sugar levels had dropped also now.. *(i should mention i've been reactive hypoglycemic since i was a child) a few blood tests later is was uncovered that i was lacking salt.. and that my red blood cells were small and that i didn't have as many as other people.. so salt pills later and fludrocortisone i was sent home.. i was tested for addison's disease which came up as a no after an mri scan i was also tested for an insulinoma. What's funny is i have nearly all the symptoms of addisons disease apart from the darkening of skin.. the test they did was sent off to india.. i did have a little more energy but not alot.. i was still getting very dizzy and exhausted.. which then leads us to a ton of tests later and my last major admission into hospital last april.. i blacked out and my sugar levels were really low -3 (hope that sounds right i can't really remember at the time, when i have bad turns i get confused and can't focus) anyway once again i am tested for a tumor which shows negative, also for diabetes which is also negative.. meanwhile i have also developed a really bad new symptom on top of the legs swelling a little.. which is my feet turning blue/black due to blood pooling.. ( i had had this a a few occasions in the past, especially my nails in my hands going blue etc)Anyway one evening in hospital i really wasn't feeling very well so i called the nurse.. they took my bp which was 70/45 but my heart rate had dropped from its normal 55/65 to 46.. i was rushed to IVU as i felt uncomfortable in my heart and generally felt very unwell.. on being there for 4 days on 24hr monitoring.. one day my heart rate keep slowing day to the point it dropped to under 28 i was given an injection to speed it up.. 153 bmp 10 seconds later and the worst experience of my life i slept... they then decided to put me on midodrine aswell as the hormone steroid..anyway i seemed to get better.. i moved to LA and the weather definitely seemed to help my condition.. bearing in mind still no underlaying cause had been found.. i had the odd day but on the whole a day in bed seemed to fix it...which brings me to the present.. 8 weeks ago i went to see the specialist whom i feel looks on myself and my condition as a bit of a joke.. as i think he judges my condition by the way i look and i am a lady who dresses well and looks after herself and can cleverly do a natural look makeup to give myself colour even when i am very pale..anyway he decided that we should take me off the hormone steroids and double up the midodrine dose.. which i was over the moon about!! anyway 3 weeks ago i started to feel tired again.. i've also noticed my underarm hair is patchy some of it has stopped growing.. my legs blood pooling has been really bad the last 4 days and 3 days ago i woke up at 3am with discomfort in my chest.. i did my bp and it had dropped from it's normal 100/70 to 84/54 and remained like that til morning when i took a dose of midodrine.. i've been resting and had hoped my condition would stable itself out.. only as i type this my heart feels skipping.. i have my legs elevated as if i put them down they pool.. i'm also getting hot spells, sweating and my cheek are flushed i also have a mild pain in my stomach which is bloated..i'm getting goose bumps chills more which i appreciate is side fx of the midodrine but to be honest i don't reallt get that a year later.. i feel like an animal that just wants to curl up in a ball.. as i keep getting a pain in my stomach and the goosebump chills feel weird.. i've noticed when my bp is down my heart rate is speeding up to over 100.. i'm guessing this is due to the fact it's trying to get the blood going round either that or it's freaking out!!I just wondered what you thought might be going on?? have i caught a bug that is messing my illness? am i verging on my body going into crisis?somedays i do wonder if there is something seriously wrong with me.. and if the other automics are going to go.. i wish i knew what was going on!!I'm in LA with no medical insurance... here's a full list of my illness'svasovagil syncopeautonomic dysfunction (tested for.. apparently it's only the non working function of constricting the veins that has gone)reactive hypoglycemicendometriosisposEhrlers-Danlos Syndrome (EDS) type 2 as i child i had serious renal problem kindest regards

Hi all - my daughter and I just got back from the Mayo clinic a couple weeks ago where she was diagnosed with autonomic dysfunction. She experiences muscle weakness, tremors, rapid heartbeat, dizziness, blackouts, blurred vision, chronic fatigue, headaches, mood changes, difficulty concentrating. She has also been diagnosed with anxiety, depression and ADHD. I am posting because I didn't see any posts that talked about increasing fluids or exercise. We were told that my daughter needs to drink 3 - 4 liters of fluids per day (water, sports drinks and juices are preferable) along with the salt increase. The combination would increase blood volume and help circulation. The big thing they said - their literature says it is the KEY - is that she must exercise daily. She had stopped doing anything physical because even walking up the stairs caused tachycardia and muscle weakness in her legs. Our Dr. said she has to get to the point where she can do 30 minutes of aerobic exercise every day. Right now she can only do 10 minutes - up from 7 minutes when she started - and it's been painful just as the doctor said it would be. But she's trying and the doctor said that after about 3 weeks she should start feeling better. It hasn't been 3 weeks yet but he said that the exercise actually strengthens the blood vessels and helps circulation. She is only 17 so I'm not clear on whether autonomic dysfunction is different in teens versus adults.

Hi all - my daughter and I just got back from the Mayo clinic a couple weeks ago where she was diagnosed with autonomic dysfunction. She experiences muscle weakness, tremors, rapid heartbeat, dizziness, blackouts, blurred vision, chronic fatigue, headaches, mood changes, difficulty concentrating. She has also been diagnosed with anxiety, depression and ADHD. I am posting because I didn't see any posts that talked about increasing fluids or exercise. We were told that my daughter needs to drink 3 - 4 liters of fluids per day (water, sports drinks and juices are preferable) along with the salt increase. The combination would increase blood volume and help circulation. The big thing they said - their literature says it is the KEY - is that she must exercise daily. She had stopped doing anything physical because even walking up the stairs caused tachycardia and muscle weakness in her legs. Our Dr. said she has to get to the point where she can do 30 minutes of aerobic exercise every day. Right now she can only do 10 minutes - up from 7 minutes when she started - and it's been painful just as the doctor said it would be. But she's trying and the doctor said that after about 3 weeks she should start feeling better. It hasn't been 3 weeks yet but he said that the exercise actually strengthens the blood vessels and helps circulation. She is only 17 so I'm not clear on whether autonomic dysfunction is different in teens versus adults. Hi There,I don't know if it is different in teens vs adults but I do know that i've done this experiment for One year... july 29th was one year and it has taken me from 8 midadrine and 2 fludracortisone a day to 2 midadrine and still 2 fludracortsone. Up until two years ago I had been very active...My doctor is going to put the experiment into the medical journals. I know how much it is helping me and hope to help others like your daughter.I went to Mayo Clinic in Minnesota in 96 for RSD, they told me I wouldn't get any better. I say, "As long as you have Faith and a will to live, NEVER say NEVER." Mayo and Duke said I'd never get better and thank the good Lord I proved them wrong. I fought for 8 years but they were wrong. I'm now holding onto faith, fight, great support from Family and Friends and a wonderful doctor who was willing to Think OUT OF THE BOX..If I can be of any help please let me know. I was diagnosed with Autonomic dysfunction in 2004 and managed it with 10 salt tablets a day, holding on for dear life when the BP would drop to 60/40, wrapping one leg around the other while sitting pushes the BP up and I elevated the head of my bed. When I compare last year in June, lying flat and feeling great until I tried to sit up... to now with infusing once a day and my meds and being able to STAND long enough to brush my teeth, actually walk around in peoples homes for a visit as long as I can sit quickly and also rolling everywhere using my feet in my wheelchair. If I use my arms in the wheelchair the BP drops so it's feet and leg power..Best of goodness.... keep in touch hugsrhealthy

Has your daughter's hormones been tested? Progesterone, estrogen, testosterone -- by saliva essay. I had this problem. After hormones being corrected, I do not have this problem.Hi all - my daughter and I just got back from the Mayo clinic a couple weeks ago where she was diagnosed with autonomic dysfunction. She experiences muscle weakness, tremors, rapid heartbeat, dizziness, blackouts, blurred vision, chronic fatigue, headaches, mood changes, difficulty concentrating. She has also been diagnosed with anxiety, depression and ADHD. I am posting because I didn't see any posts that talked about increasing fluids or exercise. We were told that my daughter needs to drink 3 - 4 liters of fluids per day (water, sports drinks and juices are preferable) along with the salt increase. The combination would increase blood volume and help circulation. The big thing they said - their literature says it is the KEY - is that she must exercise daily. She had stopped doing anything physical because even walking up the stairs caused tachycardia and muscle weakness in her legs. Our Dr. said she has to get to the point where she can do 30 minutes of aerobic exercise every day. Right now she can only do 10 minutes - up from 7 minutes when she started - and it's been painful just as the doctor said it would be. But she's trying and the doctor said that after about 3 weeks she should start feeling better. It hasn't been 3 weeks yet but he said that the exercise actually strengthens the blood vessels and helps circulation. She is only 17 so I'm not clear on whether autonomic dysfunction is different in teens versus adults.